I want to ask any of you that would like to answer. Do any of you regret going on treatment?. And if you had it to do all over again would you still make the same decision? As I said guys, this is all so new to me, and I'm worried about quality of life. Please forgive me if the question seems inappropriate. Thank you all.
Have to ask : I want to ask any of you... - Advanced Prostate...
Have to ask
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Since I had a PSA of 400 and mets, there were no options. ADT was all that was offered - and SOC for me. Been on it for 8 years. Struggle with some of the side effects BUT I am still alive and enjoying life - though things are certainly different. If I had it to do over again, I would have listened to the advice to do weight bearing exercise and ED meds - now on Tadalafil 8 years ago. Really does make a difference
I think your question is appropriate
Stress and worry can be a big burden - try to give yourself a break
Thank you
I've been on Lupron, Zytiga for about a year. When diagnosed I was already in pain from bone mets. 10 rounds of radiation. Zytiga and Lupron have definitely saved my life. I hate taking them, but the alternative is far worse. My lifestyle is good. Still working, travelling, etc. Fatigue is an issue but has been managed with exercise and some B vitamins. Clearly it's your choice, but I'd do it again in a heart beat knowing what I know now.
The only regret I have is not pushing my urologist for a biopsy sooner, when my PCa might have been more curable than just treatable. After 44 sessions of proton and 2 years of ADT, my QOL is about as good as I'd expect for 71, and I absolutely don't regret any of my treatment. I wish I worked out more, but that's completely within my control -- I just need to get off my butt and do it!I read your bio, you're young (compared to many of us here), and your cancer is not too advanced. My advice -- do everything you can to stop it now, and worry about regrets later (if ever)!
I am advanced, Gleason 9, high PSA 1.3 PSA last year, 40 the next. Some bone meta. I feel like I'm 30 yrs old, other than urgency, I have no symptoms. Routine blood work Is the only reason I know i have it. If it's already breached the prostate, I must have had this in me a while. I will try androgen deprivation only, and if it is tolerable and works I will continue.
No regrets, only wish it had been identified sooner. 5 biopsies showed nothing. Then MRI and directed biopsy showed 9, 8, and more Gleason's. 40 +radiation treatments and 4 years of ADT were successful. Diagnosed at 72 and am now 81 and as good as I'd ever hoped. Unfortunately, now dealing with serious melanoma - but that's another chapter. Only wish I'd had definitive MRI for prostate sooner instead of 5 biopsies.
Wdoug You had 55 Biopsies - Where they MRI Fusion Biopsies or a shot in the dark -- A Swiss Cheese Biopsy ? And did you ever have a 2nd or 3 rd opinion of your pathology results - Gleason Results ?
It would help if you would provide more details of your cancer diagnosis.
I have no regrets. Did my research and understood all the pros and cons of my options. However I will caution you that we all react differently to the treatments. Some like me sail through ADT and radiation others have side effects.
If you have not all ready done so do start an intensive aerobic and resistance training program ,change your diet, and lose weight.
Last thing once you make a decision do not second guess it. Your focus needs to be moving forward not looking behind you. That has no value.
Stay with us you will learn a lot.
PSA has always been great, 2023 1.3, went for annual blood work routine because I wanted to take care of myself. One year later November 24, PSA was a 40. Had DRE, MRI, BIOPSY, AND CT/PET SCAN WITH ILLUCIX, pathology finding Grade5, Gleason 9, 5+4's all. Then PT showed metastatic to bone, and lymph. Had gene testing, came back negative for BRCA1, AND 2, AND ALL OTHERS. FEEL LIKE A LION, but they tell me I'm in a very bad way. I go from thinking I am a healthy 53 year old man, to being told I'm in big trouble. Just turned 54, now I have to be medically castrated, and that is no guarantee because of the grade if cancer I'm dealing with. I'm in great shape, not overweight. I'm 5ft9, 170 lbs, don't drink or smoke. Have to start bicalutamide, then Orgovyx.
Thank for responding and your input really put it all in prospective. First I m sorry this is happening at such a young age. The shock can be overwhelming regardless of age.
You have a great physical basis going forward. You are young and sounds like you are in great shape.
Once again the ADT will result in muscle loss so keep up the resistance work. Your metabolism will change on ADT so keep an eye on the weight. You may start to experience some flab around the waist.
Besides the current plan of ADT what has your “team” offered/mentioned to you going forward from this point.
For now I only want to go with ADT, and depending on how this goes, and my quality of life after I will decide how far to go. Chemo is there recommended follow up in about 3 - 4 months after Orgovyx starting date. For now, that is not part of my plan. I know what I am dealing with, Grade, Gleason score ect ect. Life expectancy on the average. I have immersed myself into this illness so much in the past 2 months that my head is spinning. The doctor visits, the testing, and the emotional rollercoaster of hi and lows, and let's not forget about the fact that I have a job to maintain to keep this health insurance. I have to be real to myself. Thank you all for your compassion and support.
Compassion, support and knowledge is what this forum is all about. Enjoy your day!
You too sir.
For what it’s worth… I would really read up on triplet therapy (adding chemo)… I think it’s supposed to me the best you can get at this stage.
I didn’t have it because I’m low volume to lymphs only, Gleason 7(4+3)… but there’s a part of me that wonders if I should have. Basically, the jury is still out on low volume metastatic hormone sensitive PC… but with anything worse, it’s supposed to be the gold standard.
It has to be started with ADT, so make sure you think about it soon and discuss with your MO. But obviously, it’s about how you want to handle it.
It’s a bit of a head fuck to begin with… I spent months reading up on clinical trials/herbs/repurposed meds etc etc.. and I still do. But eventually, you start to relax with it a bit more. Exercise and getting out into nature help me the most.
Am starting the bicalutamide today, and Orgovyx in 2 weeks, depending on side effects, severity of them, if I tolerate them enough to be able to live a normal life and my numbers drop exponentially then I may consider a secondary med protocol. But right now, DOCETAXEL IS A HARD NO !!!!
Fair enough... that's how i felt about it too.
I'm so sorry you are going through this, especially at your age. Let us know how you are reacting to the meds. And I totally get it. I was diagnosed a few months ago at 69 and am still in shock. I am on Casodex and get my first Lupron shot today (insurance won't pay for Orgovyx). I hike a few times a week and try to do some resistance training at least twice a week. One doc I talked to said the fatigue factor for active people is like 10%
I have been a hard no to the chemo for over a year and a half.
But do look into a secondary. My husband was not prescribed chemo as yet but takes apalutimude with the Lupron. There are several “‘mides” depending on your situation.
My diagnosis is similar to yours. I am also 54. MO suggested Orgovyx and Nubequa along with radiation. Diagnosed in Sept 24. PSA was at 25, now undetectable. ADT side effects were a little tough at first, but very minimal now. Radiation SE were a lot tougher, but gradually getting better. MO told me I would never have erections again, but I take Cialis 5mg daily and its been surprisingly good in that area so far. Best of luck
Effectiveness of docetaxel depends on Decipher score urologytimes.com/view/high-...
I'm happy that your Gleason isn't any higher.
"Exercise and getting out into nature help me ." Me, too. And family and friends.
I had chemo, radiation and had the boys snipped, remain on Abiraterone/Prednisone. NED for 3 years. I still work and exercise daily. Some general fatigue, but exercise is the remedy for that.
My husband had similar features when diagnosed 7 years ago at age 52….gleason 9, pyrads 5. He had many different treatments, but continued to run our business full time, work out, travel, and enjoy life. He sometimes complains about “what was lost in the fire”, mainly how hard he has to work to maintain his weight and muscle.
He exercised even through daily radiation for 6 weeks, which helped a lot. The biggest logistical challenge was the time it took initially for all of the doctor visits, second opinions, radiation, and the like. But the team was fantastic in accommodating his schedule. For example, they would schedule his radiation for 7am, we would be done by 7:20, take a quick 30 minute walk around the hospital campus, and he could be to work by 9am. Btw, if he skipped the walk he would feel fatigued. So we made that priority.
My husband did regret traveling for some of the second opinions, when we could have done those remotely. It added stress with the travel and didn’t add any new information. He wishes he didn’t have to make the decisions for treatment in the first place, but is at peace with each one.
As of his last scan and bloodwork a few weeks ago, he has no evidence of disease. The team is considering weaning him off his current meds (Nubeqa and lupron) sometime within the next year. Given his young age and overall great physical condition, they are concerned about long term side effects of these drugs.
The time right after diagnosis was the worst for him mentally. Eventually the shock wore off and was able to “feel normal most of the time”. As I type this, he is packing for a trip to Florida. In early April we will be traveling to the UK with our son. In other words, he is enjoying life!
I’m sorry you are going through this. As you get your care team established, they will be able to help you with your particular case. Ask lots of questions and don’t be afraid to get second or third opinions. Also, a good recommendation one doc gave was to ask your doctors how other men of similar age respond to the different treatments. Your age and overall physical health will play a role in how you tolerate treatments. My husband’s side effects were pretty minimal…..so much so that the people he consults for never even guessed he had cancer.
Keep up posted on your progress and hang in there!
I’m 52, similar diagnosis last year… on Degarelix and Xtandi… it can kick your arse… but, I find with exercise you can still feel like a lion… listen to your body, don’t over push it… but I’m finding the more exercise I do the better I feel… and the less the side effects.
I also think that if we can keep ourselves in the game for the next 5 years, there just has to be something that looks curative coming down the pipeline. Amazing advances are being made with PCa research all the time, especially adding AI into the mix.
And to answer your question… I don’t regret taking any of the treatments… I also had my prostate irradiated… which hammered me a bit, but feeling better now.
Good luck to you.
Broccoli24 thank you for replying, its nice to know that there are others in the group that are close in age to me. There maybe more, but not sure. I will definitely take your advice on exercise, and nutrition. I will do anything I can to keep the dog in me. The main struggle that I have is that I still feel well ( physically), the same as I did pre diagnosis. Mentally, now that's a different story. LOL, And knowing, that I am making a decision to ingest something that will counteract my well-being is very difficult for me to deal with at the present moment. I'm not naive to the fact that symptoms will come, just wish I knew when. LOL, guess we all wish we had the answer to that one. Can I ask how and when you found out? And did you have symptoms?
There definitely are others... unfortunately. In the members section of this site there's a 'similar to me' section... which has those of us closest in age. I find this site really helpful... lot's of camaraderie, and knowing that I'm not alone with it. There's also a Fight Prostate Cancer group which tends to post more clinical research and other protocols... herbs, supplements etc - it seems less contentious to talk about that stuff there than on this site. There's a guy there Maxone73 who consistently posts really great stuff about medical advances which I find really uplifting.
I feel well too - asymptomatic, which is quite common... and it's very hard to believe sometimes that it's in there, doing its thing. The hormone therapy has left me really needing to work at feeling physically good... but it's possible. I'm probably in the best shape I've ever been in. I've made it my mission. I've also decided to go plant based... for me it's about gaining every marginal advantage until a cure comes along. I was a full on carnivore before... but I find I love whole food plant based now. But I\m being a lot more rigid about it than maybe I need to be, but if it helps a bit, it's worth it for me.
I didn't have any reason to get a psa test, I wasn't feeling anything at all (though my grandad died of PC in his 80s). I was lucky that my girlfriend pushed me to have a bunch of tests because I'd turned 50... I put it off until I was 51... If I'd listened to her earlier I may have caught it before it left the prostate. But no point having regrets/blame. I had the test and PSA came back at 533... very high... and a massive shock. I've been adjusting to the new reality ever since... but in a way, it's made me sort out what my priorities are, and slim my life down to the things I really care about. I feel calmer somehow than i did before... and closer to my girlfriend and family... so, weirdly, there are pluses. And when I feel low, I say, I will beat this thing... a cure is in the pipeline.... and it helps. There are many guys who've lived for years and years with advanced prostate cancer. Thinking positively will be your best weapon.
I can't tell you how much your words, and personal experience has lifted my morale today. You have given me a little more hope and courage to fight this. Can you give me the names of the other groups? I'm grateful I found this one, and all of you fellas to share with.
I'm really glad to hear that... there is so much happy life beyond diagnosis. And for me, deciding to fight it feels like the most positive way I can live my life.
The other group is here... healthunlocked.com/fight-pr...
My only other advice would be, if you can, try not to think too much about what it may be like down the line, because we don't know... live in the moment, enjoy the sun on your face today, eat well, exercise... fear of the future is terrible... I get it from time to time and have to really work to be in the moment now. At the start I had really dark imaginings about it all... that's receded the more experience I have. Of course it comes back... and I have to fight to get back to positivity... which I can definitely do.
I really found this a good way of thinking about it... journalofethics.ama-assn.or...
Hi Broccoli24, I just tried the link you send to the journal of ethics and for me it came up as that I'm blocked😱. Just wondering if you could post the info to that link in another way that may allow access?? Thanks so much.
Here it is… part 1
The Median Isn’t the Message
Stephen Jay Gould, PhD
My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli) identifies three species of mendacity, each worse than the one before—lies, damned lies, and statistics.
Consider the standard example of stretching truth with numbers—a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean represents our usual concept of an overall average—add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield twenty for each in a fair world). The median, a different measure of central tendency, is the halfway point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean, but can balance only one mendicant in calculating a median.)
The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered upon Southern California, feelings are exalted as more “real” and the only proper basis for action, while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often becomes the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”
This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story to illustrate the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
Part 2
In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: Mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: So that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.
If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, and socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
Hence the dilemma for humane doctors: Since attitude matters so critically, should such a somber conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge—and I am convinced that it played a major role in saving my life. Knowledge is indeed power, as Francis Bacon proclaimed.
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months”—the very conclusion that must be avoided, both because this formulation is false, and because attitude matters so much.
I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point may seem subtle, but the consequences can be profound. Moreover, this perspective embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.
We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis on clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for calculation, then “I will probably be dead in eight months” may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently —and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: Fine, half the people will live longer; now what are my chances of being in that half? I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. Skewed distributions are asymmetrical, with variation stretching out more in one direction than the other—left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, little space exists for the distribution’s lower (or left) half—it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran—for I had already concluded that my favorable profile made me a good candidate for the right half of the curve.
The distribution was, indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight-month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, that most precious of all possible gifts in the circumstances—substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah—set thine house in order: for thou shalt die, and not live. I would have time to think, to plan, and to fight.
One final point about statistical distributions. They apply only to a prescribed set of circumstances—in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.*
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.
The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the left tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: The reports of my death are greatly exaggerated.**
*So far so good.
**Since writing this, my death has actually been reported in two European magazines, five years apart. Fama volat (and lasts a long time). I squawked very loudly both times and demanded a retraction; guess I just don’t have Mr. Clemens’s savoir faire.
Thanks so very much, Broccoli 24!! Not read yet, but looks like a great read. 🙏🙏
A pleasure - hope you find it helpful/uplifting.
That's a good and appropriate essay to post here. Thanks Dr. Broc.
I was testing also regularly PSA until it went over the limit. Then DRE, MRI, and Biopsy that showed Gleason 3+4 and PET scan. I try to delay the cure but psychologicaly i couldnt deal with thinking what could happen. So after a while i did a treatment. RP. Important is to ‘choose’ and assume the cure. My Qol changed, but i will never have prostate problem as i dont have one anymore. I just hope not having a recurence. Of course i would prefered having to do this later. But i was the one to choose to control my health regularly and testing PSA. Life is hard
8 years, 8 months in wouldn't change a thing
I wouldn't change a thing, I love life - being on the other side of the ground would suck!
I was on ADT for 2 years, It wasn't horrible though it did have some issues such as loss of libido, some fatigue, hot flashes and loosing body hair. On the other hand, you have no body odor! I could sweat out a t-shirt, let it dry and it still smelled the same as a fresh one.
I am now off ADT for 8 months and am feeling great! All of the not fun things about it seem like distant memories now. Had I not done it, I know I would die, no brainer!
I regret having cancer and needing to go on ADT but I don’t regret doing it. I didn’t see that I had another viable choice.
I wouldn’t make a decision based on fear of what may or may not happen. How ADT affects quality of life is unpredictable. And there are steps that can be taken to mitigate the SEs. Some have really onerous side effects and some not so much. For me, I’m on the less onerous side of things. Certainly annoying and I wish every day I didn’t have them but they aren’t horrible. You can always go down the ADT path and see how you feel. If the SEs are too bad you can look into adjustments then.
No, no regrets on wanting to live to see my grandchildren.
I regret having poor care early on, that was rectified.
Heck yes, I would do it again in a heartbeat….and at times, it’s been tough with the treatments and my little “mind games”. 😊 However; I’m still here, enjoying a fairly good QOL and giving thanks for the beautiful time that I have left with my family. I think we all question that “no treatment” option from time to time, but I quickly pull myself back in. Life is so good. Good luck to you in everything. Jim
Life is beautiful now and as it was prior to diagnosis.
When this started, I made a vow to my wife and family, that I would never choose to leave this life or, their love.
Even castrated, I am a man and have a duty to my family until my demise.
At best, I can show them how to face adversity at worst, how to die fighting.
Life is wonderful!
I do not regret having had treatment because unlike many, following diagnostic of stage 4, instead of rushing into whatever my MO would suggest, I still took a year to decide what medical treatments I'd go for. So when I tried the treatments, I was well informed. It's regrettable that the medical treatments were not a success but they had to be tried.
My regret, is that I was not tested for prostate cancer years earlier since my mom had died of breast cancer. I wish I could have aware of this malfunction in me before it reached stage 4. Then again, can I regret something I did not do because I had no knowledge of it?
I think things are simply what they are. Then we deal with what we got. 
Doesn't matter, I had my PSA tested every single year since I was 42, now 54, was 53 when diagnosed. My PSA was .9 and the highest it ever got at 52 was a 1.3, then a year later to the day it was a 40. That is what angers me the most!!!! All my other blood markers were all in normal range. And my cancer is metastatic. So in 1 year, I went from 1.3 to 40 and metastatic. WTF IS THAT!! I do not trust medical.
I too had low PSA. Mine was 3.5 at the time of my Gleason 9 metastatic Dx. I'm sure if I hadn't pushed for further testing when I did and waited a year, I may well have had very high PSA and Mets probably all over.
I am around the same size as you a bit older now going on 63. My journey/adventure started when I was 60. PSA highest 3 for me but was having stomach problems so they did a colonoscopy checked my stomach out with no major problems but felt a tumor on my prostate then the journey began. Diagnosed March 2023 Gleason 9 T2 localized no METS after PT Scan. Started hormone therapy with bicalutamide but stopped since it was screwing around with liver values. So pamorelin castration shots. Have one more to go in May and had my PSA checked last week and not measurable <.01 so far so good. In my profile all this info but had 25 radiation treatments then brachytherapy and got nuked i call it back in Sept 2023. I am around your same size and train every day. Was a 43minute 10k when it started now around 50 minutes testosterone gone....but who cares i have my life and chance to enjoy life every day with my family..ok castration and sex lust gone but who cares i love life and thankful for every day...the power of now Eckart Tolle i have quoted before...nobody knows what tomorrow brings or what happened before...but take action and train...you will get through it. chose by the way radiation instead of prostate removal since risk was high with removal that i would have permanent impotence and incontinence issues. met with oncologist and surgeon and they agreed either way i would likely have same result so i took less invasive risk route. good luck and this group has really helped me take it a day at a time..
Thank you for your feedback, I appreciate it.
Did you by chance suffer a Covid infection?
No regrets whatsoever. Diagnosed at 65 now 72. Gleason 4+3 PSA of 52. Doc suspected likelihood of escape though scans did not reveal it. RP was scheduled and post op revealed Stage 4. Bicalutamide was started followed shortly thereafter by Lupron. 39 sessions of radiation after about 6 months on ADT. Both bicalutamide and Lupron continued 4 full years.
I have been off all treatment now going on 3 years. I don’t feel quality of life compromised. Neither ADT or radiation had any side effects for me that affected QoL.
I still see my MO every 6 months. I have no regrets as MO says she believes my life expectancy post treatments is basically unchanged as if I never even had the PCa.
Very happy for you Taylor.
you must be kidding!
I have fighting now for 27 years, the option is to be dead!!! Give your head a shake and man up, then go to a children’s hospital and visit kids dying of cancer! Ie think of others bro!!!
Billy boy, I asked a question to men from their experience to give insight to a new grade 5 Gleason 9 patient with metastasis. I love life just as much as the next guy. But I have heard horror stories, just to squeeze out an extra year of a miserable life. As far as children's hospitals I have been a St Judes hospital donator for about 5-6 years now. I know the horrible cancers that they face, much worse than mine. It does not negate the fact that I am fearful and unsure. It was a simple question asked of men who could choose to answer or scroll by. I chose to reach out, first step into this process of healing. I think of others first all the time, my family mostly. And the toll it will take on them. My support system is small, and I look at the big picture, not just wanting to live. So, enjoy your day, and I will mine.
We’ve had problems w Billy boy before, just totally ignore him, there’s always a bad apple..,
Life or death, which one do I prefer ? Life ✔️
Me too Lettuce, just worried man about these treatments. Heard some horrible outcomes for some. Just wanted some feedback. Thanks again
I understand, but with respect, don't put the cart before the horse. The side effects can very debilating, but you will rebuild yourself and fight back. In some respects you answered your own question when you posted, everyone one of us here, took the treatment 👍😉.
I wish you well, keep us all informed, you've joined a good bunch of people.
I will, thank you.
No regrets here. ADT 96 weeks was tolerable he says. Mother and Aunt both breast cancer survivors. We are glad we zapped the primary tumour with EBRT and now 8 years since diagnosis we are flashpacking the planet and cruising into a fabulous post work life. Make a well informed decision and maybe do it soon. ADT alone might not be a solution. Good outcomes to you🌻
Chemo.....doxetaxelI researched stats, not great statistics!
Was kinda feared into by the oncologist and cancer nurse...
Had PSA of less than 0.5 at time of starting it, watched my numbers gradually increase during 5-6 sessions every 3 weeks.
People who have done it say 'ITS WELL TOLERATED'...
But it's not just the period of time on it, it also takes ages over a year for me to get my body healthy from it.
Thats all while being starved of testosterone.
Maybe if had testing first to see if it would be helpful for me.
Then monitored if it was being effective
Then a concussion.
But my oncologist and NHS method was
'open mouth'
Take your medicine
Don't question
No go ...
Maybe others have better experience of chemo?
But I don't think I would have done it
And won't be doing it again(quality)
I've been around a few, bald, bloated, pale on there way out...
Thank you for the honesty, I am against that form of treatment. I like my healthy cells.
This is just my opinion on my cancer.And everyone is different, I won't rule out a treatment that can help...
My opinion was in hindsight and poorly recommended from a one size fits all oncologist point of view.
Chemo may cure you and others....
I was 56 at diagnosis, Gleason 4+4, healthy and no symptoms apart from a slight lack of flow. I felt like I was in the prime of life…3 years into a new relationship with the love of my life, who brought me a ready made family, something I was waiting for, but never realised. Work and finances finally in a good place. Then bam!
I have to say, all of the side effects of ADT and Radiation were insignificant to me…apart from the loss of libido and ED, this was devastating. In so many ways. There is a lot you can do to counter it, and they do work, I’m using everything I can get my hands on!! Keeping a viable sex life became my main mission, and in a way was my method of fighting this horrible disease. But inside you both know that something has changed, and will never come back.
I’m still mourning the person I was. I feel like I’ve lost a lot, but…I have absolutely no regrets. I’m still alive, so there is the opportunity of starting again, this is the greatest gift. I’m very happy with the choice I made.
Stay strong and never stop fighting
Despite the side effects I have no regrets on nearly 5years now on ADT + ARPI (Enzalutamide). Life has changed but that day we all get the big APCa diagnosis life changes however much we hope it hadn’t. Good luck my brother.
Have you/your team discussed estrogen therapy (PATCH trial). At your age maintaining your testosterone is important for QOL.
The only thing 'Black and White' in Prostate cancer is that everything is 'Grey and Grey'🤔
No, but i will.
Hi there . I have been going for the last 15 months and when I started my PSA was 195 . Today it is 0 and I stopped taking the Xtandi 160mg pills a week ago . The pills were taken every day . However I still had the Reseligo 10.8mg put in my stomach which works for 3 months . You should know that the side effects are many and I had many problems with them . Look them medicines up i google and read about it before you start . Would i do it again I don't know but I hope I never have to again !
Hi. Like you I was diagnosed at 53 as well. I'm now 58. Had widespread mets to bones and lymph nodes and a PSA of 1311. I have no regrets doing the treatment. Life is precious. Keep exercising. Realign your values. I'm just back from volunteering at a homeless/refugee hub, I managed to help a few people down on their luck. Good luck to you sir.
Thank you for responding to me, you give me hope ,could I ask what protocol you went through.
Hi. Yes I was on bicalutamide for 4 weeks, started Lupron (Prostap) injections evry 3 months and daily Enzalutamide (Xtandi) pills. I'm still on the Lupron and Enzalutamide for over 4 and a half years., my last PSA was 0.03. I take some supplements and repurposed drugs but I have no idea if these make any difference.
You can look into my profile for details. I just asked my husband and he says absolutely no regrets. He did ADT and docetaxel to start- almost 8 years ago at age 49 with very similar stats to yours. I'm still baffled by people's fear of chemo. He had less side effects from chemo than he did from ADT. And he was young and otherwise healthy- which is the best time to do chemo. He's had a really good almost 8 years- and still going. Works, surfs, coaches, very active. Everyone reacts to treatments differently- but he wanted to give himself the best possibility to longevity and quality of life- and that was hitting it hard when it was first diagnosed and while he was young and otherwise healthy.
Perfectly fair question, and I wish you the best!
I had elevated PSA at age 40 (22 years ago). 2012 I had RP, with positive lymph and positive SV. I had been 5-9 and 162-165 # all adult life.
After 10 years of various iADT and other stuff, I am 5-9 and 182#. The belly load seems stubborn.
As I write , I’m on a ski trip to Canada and ski at least 20 days per year. It seems helpful to keep moving and stressing my bones as much as I can, without overdoing it, of course. I did have a good fall Monday, and am no worse for wear.
It all becomes a new normal. Most people don’t even know I’m with mets . You’ll do fine!
Made my choice based on minimizing chance of long term side effects. For me, that was radiation, since I was most concerned with incontinence. And once I made my choice (2 years ago) I have never looked back. Life is back to normal and I only forward. Best of luck to you!
I don’t regret treatment because I doubt that I’d be here otherwise, instead I’ve been able to enjoy the birth of 2 grandchildren, saw my youngest children graduate college, gave my daughter away at her wedding, the list goes on and on. Probably the most important thing however is the depth of my faith and relationship with God, he has truly worked miracles in my life. Having a lethal form of cancer is what it took for me to realize what is truly important in life.
Ed
I would’ve definitely done things differently. I wish I knew then what I know now.
Treatments discussed on this post are SOC and have been for 40 years. SOC is a "must" for any guy with prostate cancer, but I did not read any comment that stated they were cured. There are many cures for most cancers if you review the scientific journals and the studies, and one simple "food supplement" stands out in the pack, that being hyaluronic acid (HA). Others could be fads, I'm not sure, but the medical community is now using HA as an adjunct for most cancers in one form or other.
I recommend you do the research for yourself and act on your gut. Use HA and stay on the SOC, it will make the journey a lot easier and can do not harm. You can take the capsules or buy in bulk and mix to your taste and drink the liquid..... Cleveland Clinic has a good review for HA, but the lab studies have proven HA kills cancer, and I suspect big Pharma will soon "bite the bullet" on this reality soon enough.
What is SOC, forgive my ignorance.
Standard of Care.
This link might be useful:
Folks here on this forum have advanced prostate cancer, meaning, if they didn't do some treatment, they would soon be dying. Or dead. It's not like a choice to do it or not. Well, I guess it is, but one route leads to an early and nasty death.
I recommend anyone newly diagnosed ask their oncologist or urologist: "what happens if I don't get treatment?" I did that, and the answer was sobering.
I asked my Dr. What his prediction was of me without treatment, he looked at me and said PAIN!!!!
I don't regret it. It gave me time to think, try alternative things constantly, and study options. I've only had hormone therapy since diagnosis in 2018, but I recently had Provenge immunotherapy and radiation.
Don't rush into anything without studying your options. But eventually you'll have to either jump into a particular treatment or monitor carefully. Don't ignore or rebel against treatment completely.
The only thing I am doing at the present moment is 24 hours in in bicalutamide, then Orgovyx. Will give it 90 days and check my numbers. If it showing promise I will continue. I will research more, I just want to slow it down so I have a chance.
Sounds good to start with.
I absolutely will not , Dr Scholz himself stated not to let the fear of spreading influence your decision on treatment, even for hi Gleasons.
People put too much faith in Dr. Scholz. Listen to your medical team.
I'm 5+5 and castrated and had CRYOABLATION + an experimental IMMUNOTHERAPY injection for treatment. .
I would’ve interviewed more urologists before prostatectomy, I would’ve learned enough to discuss the number of lymph nodes to biopsy during surgery, so it would’ve been at least 12 nodes rather than just 1. I would’ve insisted on a CT-guided initial biopsy (preop) rather than a “cognitive“ guided biopsy. I would’ve done more research before surgery to understand the risk of ED and other side effects. Most of all, since my father died of PC, I would’ve been much more vigilant and would’ve learned all about current research and treatment before I hit 50 so that I could make rational, informed decisions on treatment early on.
only about a year on ADT and Erleada. Yeah, I see muscle loss and maybe some fatigue but manageable. Yup, I would do the same thing again. I don’t see a strong case for doing nothing and every natural/repurposed drug isn’t effective enough on its own.
Have you heard anything about Ivermectin and Fenbendazole?
Yes, I have read extensively about both and you will find multiple posts on the subject right here. Some say it is a waste of time and money and others tout them as miracle cures. My take is somewhere in the middle. Ivermectin has been shown to affect some pathways that control proliferation including PCa. Reasonable dosages, like 12-24 mg seem to have no side effects so it is a lower risk addition. Some research shows Fenben, and the derivatives, also have some positive effects but, in my opinion, should only be taken if someone is fairly regularly monitoring liver function. I am not a fan of some of the very high doses some people use since the chances of problems without real benefits increase. My favorite triplet, concentrating on suppressing stem-like cells is nano formulations of EGCG (green tea), Thercumin and modest dose Ivermectin. Quercetin would also make the list if someone comes up with a better absorbed formulation. I would also not that the research is a bit scarce and also flawed in that often the only measure used is PSA. Many compounds suppress PSA but not actual cancer. Stem like cells do not produce PSA but are the core reason why metastatic cancer is considered incurable. Another fault in research is that the cultured cells have not normally been subject to ADT/ARSI treatments which may increase their sensitivity.
Although you didn’t ask, the one substance I would avoid at almost any cost is high fructose corn syrup. I have studied this garbage for years and it is way overused and the liver metabolizes it into nitro fuel for many cancers.
Other posters may have offer differing opinions which should be respected since none of us have all the answers but you will see many guys have done pretty well all things considered.
Hey I wouldn't say I regret taking treatment, I say that wish I knew what I know now about the balance nutrition , mineral and vitamin intake plays in our health and of I had that knowledge I would not have the challenges I have today. Our mind and body is equipped to resolve 100% of our medical challenges when given proper levels of all natural vitamins minerals, metals and other complex antibodies we need to have proper balance biologically to correct anything not synthesized artificially. Heredity plays a part but not as drastic as THEY suggest.
You sir are speaking my language, I have engrossed myself into holistic medicine, I just need to slow this monster down a little until I can unleash natural hell on it. I have been in talks with herbalist from Canada, that have presented cases that make mine appear like the common cold. That have recovered completely from deaths door. It's not for everyone and it is a serious discipline. And you can not take the same regiment every week, it must be switched up. That is key.
Hey just seeing this and yes sir it Surely works and is best when issues are noticed early on, and even if we are in the throes of fighting for life or just trying to feel better we all need to ride this Natural Food Bus, THEY have tainted and it destroyed everything THEY get their hands in to. Switch up is correct sir the body will adjust and make corrections to any stimuli given a period of time. The creator created the perfect machine, it had alarms, notifications and will repair itself in most circumstances. Trauma is diffrent because the activity is normally very fast and damaging to multi systems, but given time and proper care it too can be augmented, reversed or literally healed, yes the Biological sustenance we call the body is miraculous. Njoi my friend and remember, never, ever ever ever give up on Yourself. Love light n laughter my Bro.
Treatment of Erleada and Lupron has worked well and I responded very well so no. Always look forward, never back.
Havanablues Did you get biopsy sample genetic profiling? Decipher score? Prior to the last year or so, docetaxel was used for high tumor load cases. Since then study results have come out that it helps when used up front with ADT and RT for all advanced cases. Are you familiar with the NCCN guidelines that doctors use (wherein SOC resides)? There are a lot of trials afoot, trying to recruit patients like yourself (ie early stage, prior to being heavily treated) and also trials for the heavily treated. Avoiding doctor-recommended and seconded treatments over horror stories with PCa may only insure you get to experience the ultimate horror of drawn-out painful death by PCa. If it runs in your family, think again about that.
Here is a link to ASCO 2025 cancer summit documents, see the one that summarizes presentations and ends with recruiting trials.
conferences.asco.org/gu/abs...
I have done all tests even genetic, Myriad Genetics came back with a negative on all such as BRCA1 and 2, and several others. Moms side has cancer, all much older and no history of PC in any of the males.
Derf, she wants me to possibly do docetaxel after 3-4 months on Orgovyx. I'm not mentally there yet.
Havanablues :
Have you read Dr. Patrick Walsh's book : Guide to Surviving Prostatte Cancer ... It may give you more guidance . It is frequently referenced on this site .
No i have not.
Havanablues . Another excellent site : MAYO CLINIC CONNECT .
Also do not get caught up in Analysis Paralysis . You can overthink your options and get more uptight and stressed out .
Remember James Dean's thoughts on life : Dream that you will live forever -- Live everyday thinking you will die tomorrow . I'm 85 -- Had I not been diagnosed with cancer Like you , I would not know I had it .
Enjoy life - we could drop dead tomorrow . GOOD LUCK .
Thank you sir, you are right.
Havanablues :
F.Y.I Educational Data .
Did you know the highest PSA recorded was over 20,000 Yes Twenty Thousand . My late brother-in-law passed away 2 months short of 90 . When diagnosed his PSA was close to 14,000 . Many with high PSA numbers "Do not have cancer " _ Others with very low PSA - " Do have cancer " .
I did not know that, these doctors instilled so much fear in me that I thought I was on my death bed. That was earlier in diagnosis.
Lots of great advice and opinions for you so far. I was dx at age 59. I did not want to regret missing a treatment that might cure or provide extended remission, so I went the triplet therapy route. I have to agree with pakb's comments. Although tough for a few months, the chemo did not cause me any long term side-effects. I had more from the ADT and radiation. Everyone is different. In my case I responded well, and off therapy after 24 months. Going on 1.5 years in remission - hoping for many more, but if not, I won't regret not doing something. Good for my mindset. Holding back on some treatments may mean they are less effective later. Just food for thought.
i was diagnosed at age 57. Became stage 4 about 7 years ago. I’m now 69. I highly recommend the fight. I’d do the triplet therapy and minimum 30 months of ADT PLUS Zytega or the like. If you get down to “undetectable PSA for at least 6 months, you can consider a highly monitored vacation. Plus MDT for any mets. The earlier you start the fight in earnest, the better. I am currently on vacation # 2 for 30 months and feel great
I even felt pretty good on my meds. The biggest key is resistance training (weight lifting). I was told in no uncertain terms by my MO that my muscles would turn to mush without it and even hired a trainer. I do a tough hour plus session 3 days a week. I was actually able to gain a little muscle with hard work plus it reduced any fatigue greatly. In addition, many studies show that weight training produces killer t-cells that fight your cancer and extend life. It’s a no brainer fight the fight with all you have, and hit the weight room hard. YOU WONT REGRET IT!
Schwah
All of you have been great motivators for me, I thank you very much.
Havanablues . Dr. Walsh's book is : " A MUST READ " The best money you will ever spend .
I was expecting five extra years with treatment; I've had just under eleven. 54 is spring chicken from where I stand. No one can tell you what is right for you, but you can do a lot with any extra time that you get. I have no regrets - and I ain't finished yet. Bonne chance, brother.
Spoken like a true poet, thank you sir. I am starting treatment, I just don't want to be a lad rat.
LOL Treating Prostate cancer has been a "work in progress" since it was first attempted decades ago AND STILL VERY MUCH IS ! Second guessing (using hindsight) your treatments is a good way is to add un-needed anxiety to your life.
I asked my partner, who completed a 26-day course of radiation in November and is 8 months into 24 months of Orgovyx, if he would make the same choices again. This is what he said, ""It takes courage to move forward when you hear a diagnosis that includes the word cancer. One has to take a deep breath and choose life. Find the best possible treatment team ... not worth accepting less because this is about you. Take on those treatments as your life's most important action and surround yourself with a team of cheerleaders who will nudge you forward when you feel exhausted because the victory cannot slip away. Live life ... love who you are and do what it takes to gain as much time as you can in the days to come. "
Best of luck to you.
I sound like Cher— If I could turn back time! If I still had the RP and then the PSA started to climb 3 years later, They just blasted the prostate bed with 35 shots. Today, I would not have radiation without having a PSMA Pet-scan.
Knowing what I have since learned, I doubt I would have done the RP surgery. I sought the best possible care in my geographic region and fought to get to the front of the line. I am not disappointed in my care. Just not sure the RP was the best course since the cancer was evident in lymph nodes. The surgeon attempted to dissect those nodes but did not get them all. Thus, had to do ADT and whole pelvic radiation. I'm hopeful that I am finished but you never know.
Had I known that ADT and radiation were going to be required, I would probably skipped straight to that. Low T and ED are now my constant companions. I'm not depressed. I just miss my old self. I am still working and enjoying my life.
My MO at Duke would probably say that he wouldn't change a thing. But having read so much here, I think I could have kept my prostate and probably be in the same place, likely without the ED.
Great question and many great answers.
As I am ten years older and a lot happens in that decade, my journey differs. But, like you, I am advanced, Gleason 9, PSA jumped from 1.1 to 17.0 (albeit more than one year apart) to 31.7 in six months.
One sit-bone met, one tailbone lymph met, no symptoms, and lots of summertime exercise in Alaskan wilderness.
And again, without routine blood work I wouldn't have known I had it (except for maybe hip pain that x-rays show is also due to arthritis).
I was diagnosed in November, the week of the election. I live in sort of a small town when it comes to medicine and the advice I got in my town differed from that given when I reached out to a "high-volume" cancer center associated with a research university.
I'm glad that I reached out to the cancer center.
My view is "hope for the best, but prepare for the worst." I took treatment options where the two opinions overlapped: testosterone (T) reduction (i.e., ADT via Lupron since November 6, 2024) + T uptake blockage (i.e., Nubequa since December 17) + radiation to mets (5 days in November) and to prostate (coming up). The cancer center said chemo would be overkill given my "low volume", that is, only the two mets localized to my pelvis. My understaning is that high volume is four or more mets, especially if outside of the prostate.
Importantly, by reaching out to the cancer center with connections to the university, I am better positioned for trials when/if my cancer becomes resistant to the ADT (i.e., T reduction + T receptor blocking).
My T dropped from 350 pre treatment to under 3 the last it was checked (3 weeks ago). I have changed my diet including a reduction in sugars and starches (I continue to eat moose, caribou and salmon, but very little beef, pork, or chicken) and only get hot flashes after I eat a sweets.
The lack of T has changed me during the few months that I've been starving the cancer from consuming it. But it's changed me more emotionally and mentally than physically, I feel at this point. Probably because those changes are easiest and fastest to notice. Fresh air and exercise make me feel much better. I get out 2-3 times a day.
I can't say I feel any less energetic than I have over the last five years. Sometimes it seems like my math, knot-tying, and map-reading skills are diminished (no joke!) and I do a lot more food prep and house cleaning (!).
Honestly, I feel more relaxed socially, like I'm a "nicer" person.
The libido loss is regrettable, but my wife and I have been together for 45 years, since we were teens, and boy did we get after it for decades! In some ways the ADT seems to accelerate the natural aging process....
So, I'd say get second opinions. Do your research. Realize that the freak-out you feel now will pass. As others have said, exercise and change your diet. Doing so gives us a sense that we have some control, and both really do make us feel better. Embrace family and friends.
Realize that we all die, but those of us diagnosed with advanced cancer just realize it more acutely.
And no, once I felt equipped with the knowledge to move ahead and did, I have no regrets, but it's only been a few months.
I think that we all may have some regrets but when you're facing death, the most aggressive treatment seems like the right thing to do. There may be side effects down the road but one must weigh their options.
The likely outcome of treatment will extend your life. If you educate yourself and understand what treatments are out there, how effective they are and the side effects, you can make the best decisions based on current data. You may make some missteps but treatments are sensitive to each patient's disease and that is to be expected.
Persistence, fortitude and a positive attitude will keep you going. Enjoy every day of life with family, friends and alone too. Stay busy, exercise as much as you can, adjust your diet and have fun!
I know the diagnosis is a gut punch; we have all been there. I imagine it is even more so at your "young" age. I wish you the best.
I was a very healthy 68 year old when my PSA went form around 4.5 to 7.5 on annual physical. Biopsy revealed G8 (later upgraded to G9 by Dr. Epstein at JH). Initial imaging revealed no spread so I opted for RP. Unfortunately, 6 months later with bump in PSA a PSMA PET revealed a T8 met. Treated with SBRT (radiation) successfully. But the tumor was aggressive and had rapid doubling 4 months later with another PET showing new pelvic node.
After much research I selected JH for treatment. My MO was very aggressive and I underwent triple therapy (Lupron, Darolutamide and Docetaxel). Four cycles of chemo over 3 months. PSA went rapidly undetectable after the second cycle and has remained so for >2 years. The Daro was discontinued after the chemo (3 months) and the Lupron stopped after one year. I had whole pelvic radiation 10 weeks after completion of the chemotherapy.
My T never fully recovered so my MO put me on TRT (under care of an endocrinologist. I realize this is controversial, but I have total faith in my team at Johns Hopkins.
For me, the ADT and subsequent loss of testosterone was the worst side effect. Loss of energy, libido, hot flashes etc. The chemotherapy was not that big a deal. I lost most of my body hair and head hair but the head hair came back in a few months. The TRT has been a game changer for me.
Everybody has a different story. There are a lot of successes out there. Good information on this site. Curious...how many bone mets/lymph nodes do you have?
Good luck and best to you!
No. I've had thorough treatments for both breast cancer (2015) and prostate cancer (2020). I've also had two low-grade cancers, thyroid and bladder... both thyroidectomy and a tumor removal in bladder. Also had a neuroendocrine tumor (stage 2) in stomach. Chemo for Breast and Prostate (stage 4), Herceptin and Tamoxifen for breast 6 years, Xtandi and Lupron last 4 years for prostate (PSA undetectable). Now, fatigue is real on the Xtandi and Lupron. Very hard some days. I keep pushing through, though. I have no great insights other than I ask questions and in three cases chose to remove organs, which can be uncommon. I get two-year endoscopy on stomach and yearly cystoscopy on bladder and ultra sound on thyroid bed. I know it's a lot to read. I'm overwhelmed some days about it all but I led a pretty rough life at times, so I'm quick to fight the odds. Just the way I am, but fatigue can hold me down for a couple of days, especially in the winter. I still do the yard work on my half acre house lot, snow removal, on large drive, digging and planting, ride two motorcycles, so my life is full in retirement. I have two step grandkids, who are our greatest joy. Working on ED but not counting on that. Took me a while to think about that. I have diabetes also. I'm 68 and my wife had a hysterectomy 10 years ago, so her interest has waned. She says "we've had our fun..." Ha. True. You can do whatever needs to be done. Every breath is a golden breath. Truly.
Mr Cat
Elvis on '56 Hydra Glide
Wow sir, I thank you, and commend you with taking the time to write me and share your experience, strength and hope. Thank you for showing me that there are those who have it worse than I, do not give up and continue to fight.
I am sure that if I were single, I would never have let anyone give me that second Eligard shot, after seeing what the first one did to my head- but since I have a family, I am doing what I can to be a good husband and father as long as possible. I have been fighting major depression (caused by the loss of testosterone in my body and brain, although i would find many doctors that would argue otherwise)almost as long as I have been fighting cancer, and have had several depression drugs fail to help. Currently about a quarter of the way through ketamines therapy for treatment-resistant depression, which seems to be helping, but I still have that huge hole in my life where the 'man' part of me used to be.
Thank you for your honesty sir, the only promise I made to my family is that I would try ADT, as long as it allows me to live at least half the life I am accustomed to i would continue. I do not want to look to far ahead, but life to me has to be enjoyable, that means something different to everyone. I know what it means to me. When the time comes, I will make that decision for myself and the family. I hope you can pull out of the depression you are in, mental health is equally important as physical health. I know that I have been in dark places mentally, and that rabbit hole can go deeper and darker. Know that you are not alone sir, please reach out to me if you need to vent, as you took the time for me. Better days for you, you've had enough of the bad
Rak mi je dijagnosticiran 2020. u dobi od 53 godine. PSA 10,7, Gleason 4+3, zahvaćeni limfni čvorovi, imao sam robotsku operaciju u OLV Belgija. U Hrvatskoj sam imala zračenje nakon operacije (PSA 1,17), te 3 godine ADT. 2024. sam primila zadnju terapiju. PSA je 0,00. Želim vam dobro zdravlje.
I was diagnosed at 49 years of age in 2000. Psa of 4.19 and Gleason 3+3 both sides of prostate. I also have 3 herniated discs which is really I retired Dec of 2017. I used alternative options until May 2022 when my Psa hit 5664 and pain was winning. 30 days of Casodex with a monthly Lupron shot after 15 days of Casodex. Psa dropped to 278 in three weeks. It bottomed at 6 March of 2023. Added Abiraterone Sept. 2023 and Psa went from 19 to 1.2 March of 2024. Left it go and it has plateaued at 7. My Dr. called it elevated but stable. I still have my prostate. I see a urologist, a local oncologist and Dr Samuel Denmeade at John Hopkins. I am doing well and pain free including the blown discs. I hunt which includes getting deer out of the woods myself, I fish which includes getting my 80# canoe and 50# battery to and from the lake and I work on my Honet Do list when not hunting or fishing. When I got Covid the Pca seemed to take off like a rocket. I am not curable so I and my doctors work for QOL which means I don’t run to another treatment because my Psa went up. Pain is my motivator in most cases. I am presently on lupron monthly, abiraterone and 5mg of prednisone, 200mg celecoxibx2 and a low dose statin. I also take magnesium, curcumin, berberine and a few other supplements. As you can see by the pic this stuff can move fast when it wants to. God bless.
A
Havanablues
Questions:
1. you strayed getting tested for pea at age 42. Any specific reason why at 42
2. Did your primary say anything about the gradual, slight increase in your pea over past decade?
Some reading suggestions:
1. For your mind (as well as your body). David servan-schreiber, anti cancer: a new way of life. (2009, updated edition suggested). Yes, I am aware that the author passed away in 2011.
2. Anthony satillaro, recalled by life (extreme example). Yes, I am aware the good doctor lost his discipline after the book came out.
3. Patrick Walsh book. Get the most recent edition (northwestern urologist—coauthor)
4. Books by t Colin Campbell phd
No, my primary at the time told me i should start doing PSA just to be safe, I didn't know anything about it, it was .9 at 42-46, then 1.1 47-50 and then 1.3 51-52, then 53 this past November it went to 40. In other words, I have been checking blood work every year since I was 42. Those slight rises are normal with age, that is not considered velocity. The velocity was from 1.3 to 40 then to 59.
Wow, that pic is crazy. I went from 1.3 for past 4 years, then this year 40, and month later 59.
I am an exception as my GP calls me a "one off", I was diagnosed in July 2021 that my broken skull from a double epileptic seizure in Jan 2018🙄 my "next seizure would probably be my last" had epilepsy since age 14, in 1970 [400 seizures +] I also have neurofibromatosis type 3 [Schwannomatosis] I had 2 schwannomas on my prostate gland in March 2020, but due to pandemic isolation nothing was done, it affected my urinary flow, naturally my GP had me tested for Prostate Cancer in June 2022, a biopsy, ignorance of Schwannomatosis its symptoms causes a very rare condition whereby schwannomas/benign tumours grow on my nerve canals over hands, trunk, legs, but not the head. Whilst undergoing treatment my cancer specialist was unaware of my pectum carinatum /pigeon chest caused by meningitis when aged 10. Anyway the decapeptyl SR vaccine and the radiology sessions severely aggravated my chest "buggered chest" my rib cage is now "untreatable" I was politely informed in Nov 2023 that "no more PSA's were needed!" I knew in June 2022 that I did not have Prostate Cancer, but went on their advice, I wish in my case, I had asked for a second opinion after my biopsy, I knew there was two schwannomas on my prostate gland from early 2020, I thought they had taken this into consideration, I was NOT aware that the cancer treatment would have such a life changing effect on myself, there has been no apology from NHS given to me for "someone's" ignorance and incompetence . I am now officially terminally ill!
Many of us would have been dead and unable to respond to your question, if we had not been under treatment. I am fairly confident that is the case with me as I was DXd more than 12 years ago. I wish I didn’t have to deal with certain side effects of ADT and Zytiga (loss of sex drive, shrunken penis, weight gain…) but I definitely prefer dealing with them and still being able to watch my kids grow up, spend time with my wife and other family, and play sports (Pickleball is now my addiction, but golf skiing and tennis are still in the picture. Good luck!
I have regretted one. After surgery, I had BCR 18 months later.
The "standard of care" at that point in time was to do SRT to the prostate bed.
The traditional mainstream clinical thinking was the PCa spread out in a linear fashion, first to the prostate bed, then the PLNs, then bones... At the time I was reading various clinical trials and papers from Mayo and other NCCN Centers that were pointing to BCR in high risk PCa often spreading to the PLNs, not just the prostate bed. While not yet mainstream clinical practice, treatment for BCR in high-risk individuals was beginning to include SRT to the prostate bed, the WPLNs and six months ADT for systemic therapy.
I discussed this with my radiologist and urologist, they too had seen the data but felt there was not sufficient long-term data to include the WPLN and short-term ADT. I acquiesced, the SRT failed.
Would taking the more aggressive approach have "cured" me? We'll never know will we!
It was a turning point though; never again would I be the minority stakeholder in making treatment decisions!
Live and learn.
Kevin
Clinical History
Absolutely yes .The side effects especially libido is really effecting my relationship with my wife..Also I have a lot of nerve damage (about 70% to that area ) after cyberknife treatment.I go to gym 3/4 times per week and it helps a lot with all the other stuff .I wish I had the experience that I have now back then to maybe make better choices As per bio I’m 6 years in two psma scans no sign of anything yet TG .I’d love to come off it but MO says it’s better to stay on my ADT and Nubeqa ..
I am consistent in saying this:
NEVER question your decision on treatments! There is NO RE-DO OVER!
The choice you made was the right one. To think otherwise is to worry about things you cannot change
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